The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

The misdiagnosis letters page

Misdiagnosis letters. This page contains two misdiagnosis letters. No matter what disease one has, rejecting the misdiagnosis of 'CFS' has benefits for our cause in the long term and also immediate benefits for the individual patient in the short term. Every diagnosis of 'CFS' is a MISdiagnosis.

Letter one: A misdiagnosis letter for M.E. patients This letter is designed to be used by M.E. patients that have been given a misdiagnosis of CFS. It informs family members that the person has M.E. and not 'CFS.' This letter is designed to be used by patients that have M.E. and feel they would benefit from letting those around them know that they do not have severe fatigue/'CFS' but are too ill to work out how to word their own letter. It is in no way suggested or recommended that all patients (mis)diagnosed with 'CFS' should use this letter. The vast majority of those diagnosed with 'CFS' do not have M.E.

Letter two: A misdiagnosis letter for 'CFS' misdiagnosed (non-M.E.) patients This letter can be used by those who do not yet have a correct diagnosis, as well as by those who do. Rejecting your 'CFS' misdiagnosis is so important for your health and wellbeing and it is also important to let your friends and family know of this change. This letter is designed to be used by every patient given a diagnosis of CFS (that does not have M.E.)

The Misdiagnosis letter for M.E. patients is included in the Caring for the M.E. Patient book.

The misdiagnosis letter for M.E. patients

This form is designed to be filled out by the M.E. patient (that no longer wishes to be bound by a 'CFS' misdiagnosis) and then shown or sent to friends, family members or carers

Hello ___________________________________,

Some time ago I let you know that I was ill. I also told you in the past that the reason I was ill was that I had Chronic Fatigue Syndrome or CFS (or perhaps CFIDS or ME/CFS or CFS/ME).

I would now like to let you know that this was in fact a misdiagnosis.

It turns out that the field of 'CFS' is not at all what it first seems. On this topic our medical system, media and even government have been less than forthcoming with the facts. The amount of misinformation circulating is immense. The public, doctors and even most patients themselves have been deceived about the reality of 'CFS.'

To make a long story short, there was a huge increase in the rates of a devastating neurological disease called Myalgic Encephalomyelitis (M.E.) in the 1980s in the USA. In response to this, some medical insurance companies (and others) decided that they would prefer not to lose many millions of dollars on so many new claims and so they created a new vague fictional disease category called 'Chronic Fatigue Syndrome' to try to confuse the issue of M.E., and to hide M.E. in plain sight.

They then made the definition of 'CFS' so broad and vague that just about anyone could be diagnosed with it, which saved them even more money as many of these insurance claims could now also be easily denied. To summarise:

A. Myalgic Encephalomyelitis is a distinct neurological disease. M.E. is characterised by scientifically measurable damage to the brain caused by a virus. The onset of M.E. is always acute (sudden) and M.E. can be diagnosed within just a few weeks.

M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.

M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with M.S., Lupus and Polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining or even an essential symptom of M.E. People with M.E. would give anything to be only severely 'fatigued' instead of having M.E. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

B. Chronic Fatigue Syndrome in contrast is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting at least 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as 'CFS' is 'medically unexplained.' A diagnosis of 'CFS' does not mean that a person has any distinct disease (including M.E.).

Every diagnosis of 'CFS' can only ever be a misdiagnosis. However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled, with any number of well over 100 different conditions including post-viral fatigue syndromes, cancer, M.S., Lyme disease, Fibromyalgia, Candida, depression, PTSD and many, many others.

All a diagnosis of 'CFS' actually means is that the patient has a gradual onset fatigue syndrome, which is sometimes due to a missed major disease. The patient population diagnosed with 'CFS' is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualifies for a 'CFS' (mis)diagnosis.

Under the cover of 'CFS' certain vested interest groups have assiduously attempted to obliterate recorded medical history of M.E. even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years. The 'CFS' concept has meant that millions of people have been denied correct diagnosis and treatment and have also often been subjected to abuse and a lack of appropriate support.

So now for all the patients out there like me, it's a nightmare.

The only way forward, for the benefit of society and all the different patient groups involved, is that:

1. The bogus disease category of 'CFS' must be abandoned completely, along with all the other similarly vague, misleading and unhelpful umbrella terms such as 'ME/CFS,' 'CFS/ME,' 'ME-CFS,' 'CFIDS,' 'Myalgic Encephalopathy' and others.

2. The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. as a distinct neurological disease must be accepted and adhered to in all official documentations and government policy. M.E. patients must again be diagnosed with M.E. and treated appropriately for M.E. based on actual M.E. research as they were prior to 1988.

3. All those misdiagnosed with 'CFS' must immediately reject this harmful misdiagnosis and begin the search to find their correct diagnosis. Every patient deserves the best possible opportunity for appropriate treatment for their illness and for recovery and this process must begin with a correct diagnosis, if at all possible. A correct diagnosis is half the battle won.

The concept of 'CFS' denies patients their basic rights and subverts good science and ethics. I refuse to play any role in propping up this bent system and concept and so I reject this misdiagnosis. My illness is not fatigue based and is not medically unexplained, new, mysterious or untestable. It never was. The vast majority of those told they have 'CFS' do not have the same disease as I do.

Please understand that this is absolutely not about me wanting a fancier or scarier sounding name for mere fatigue! It is about a severe neurological disease being covered up by a fictional and vague 'fatigue syndrome' by vested interest groups. It is about the fact that research which involves vague mixed patient groups, instead of only people that have the same disease I do, doesn't help anyone. Just as you can't research diabetes by looking at groups of patients that have broken legs, the flu, rashes or headaches - you can't research M.E. by using vague 'CFS' patient groups that may or may not happen to contain a small percentage of actual M.E. patients! To do so is so unscientific it's laughable.

The bottom line, however, is that in essence nothing has changed in what I am telling you. I'm still saying to you that I'm seriously ill, and this was not and is not my fault or something I can wish, positive think or exercise away. My illness and disability is unchanged and is a reality, unfortunately. Things are very difficult for me due to this terrible disease and I could really use your support and friendship. Please treat me no differently than you would if I had M.S., Parkinson's' disease or Polio or Lupus. M.E. is very similar to each of these diseases medically, just not politically.

Not everyone misdiagnosed with 'CFS' has M.E. In fact, the vast majoritydo not. But for me, M.E. is the correct diagnosis. I wish I had known this earlier, but there is so much poor quality information out there as well as slick, misleading and manipulative support for the bogus 'CFS' or 'ME/CFS' constructs. It took me a while to work out where the truth lay. But at least I know now, and now you know too. This is a very important issue to me so thank you so much for reading this.

M.E. can affect anyone and it is not going away. The same is true of the misdiagnosis of 'CFS,' and this can also ruin lives. 'CFS' is not a genuine disease, but those given this (mis)diagnosis ARE very real, and so are their undiagnosed and untreated diseases.

We must join together, alert the public and demand action. That is the only way change will occur, through education and people simply refusing to accept what is happening any more. While it is true that there are powerful and immensely wealthy vested interest groups out there who will fight the truth every step of the way, we have science, reality and ethics completely on our side, and that is also very powerful. However, for this to be of any use to us, we must first make ourselves aware of the facts and then use them.

So what you can do to help is to PLEASE spread the truth about Myalgic Encephalomyelitis and try to expose the lie of 'CFS,' whether you are affected personally yet, or not. You can also help by NOT supporting the bogus concepts of 'CFS,' 'ME/CFS,' 'subgroups of ME/CFS,' 'renaming 'CFS' as ME/CFS,' 'CFS/ME,' 'CFIDS' and Myalgic 'Encephalopathy.' Do not support groups which promote these concepts. Do not give public or financial help to our abusers.

The creation of the fictional disease category of 'CFS' represents outright medical fraud, involving serious intentional medical abuse and neglect of patients, on an industrial scale. It is inhuman. Science, logic and ethics must prevail over mere financial and political concerns, finally. There has been enough abuse and neglect and enough needless deaths. 20 years is more than long enough

So how do I, the sender of this paper know that I have M.E. if most doctors are very ignorant about it?

It is true that a correct diagnosis of M.E. is still difficult to get. But the symptoms and features or M.E. really are unmistakeable and quite unique. M.E. is remarkably consistent from one patient to the next and there are also a series of tests that can be done to confirm the diagnosis.

Perhaps I have this diagnosis in writing from a doctor and perhaps I don't. Perhaps I am 100% certain of this diagnosis and perhaps I'm not quite there yet and need some further investigation just to make sure. But either way, please know that I have a severely disabling neurological disease and that my correct diagnosis is NOT and will never be 'CFS!'

Is there a HFME misdiagnosis letter that can be used by patients misdiagnosed with 'CFS' that have a disease other than M.E., too?

Yes, there is. It is included below.

Who has this paper been created by? Who are HFME?

Very nearly all of the 'CFS,' 'ME/CFS' or 'CFIDS' so-called 'advocacy' groups and individual advocates do NOT speak for M.E. patients and are anything but useful sources of accurate information on this topic. These groups are not run by or for M.E. patients, but also do in any way help those non-M.E. patients given a misdiagnosis of 'CFS.' Thanks to these groups, most patients and almost all of the public are ignorant of even the most basic facts on this topic. Not only are these groups not making any progress with advocacy, most of these groups and individuals are actually aiding our abusers and actively making things WORSE because of ignoranceand self interest or because they have sold patients out to the highest bidder.

Most of HFME contributors, with a few exceptions, are severely disabled.(In many cases they are severely disabled due to inappropriate medical advice to exercise and because they were not told of the importance of rest in M.E. HFME contributors feel, however, that they have no choice but to try to do what they can for M.E. advocacy, as there simply is almost nobody else currently advocating for M.E. patients. HFME is run by and for M.E. patients, and also aims to help those non-M.E. patients misdiagnosed with 'CFS.' For more information please see the About HFME page.

Acknowledgments

Thanks to Peter Bassett for editing this paper.

Quotes

Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis. It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears.

Dr Byron Hyde

M.E. is a clearly defined disease process. CFS by definition has always been a syndrome. Although the authors of these 'CFS' definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion. The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state. Patients who conform to any of these CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable.

Dr Byron Hyde

Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would have told the students to search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline. Patients are now being diagnosed with CFS as though it were a disease. It is not. It is a patchwork of symptoms that could mean anything.

Dr Byron Hyde

The term M.E. has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination.

Professor Malcolm Hooper 2006

The vested interests of the Insurance companies and their advisers must be totally removed from all aspects of benefit assessments. There must be a proper recognition that these subverted processes have worked greatly to the disadvantage of people suffering from a major organic illness that requires essential support of which the easiest to provide is financial. The poverty and isolation to which many people have been reduced by ME is a scandal and obscenity.

Professor Malcolm Hooper 2006

To the very few physicians still practicing today who began seeing patients with this illness some 40 years ago and who have continued to record and publish their clinical findings throughout, the current enthusiasm for renaming and reassigning this serious disability to subgroups of putative and vague "fatigue" entities, must appear more of a marketing exercise than a rational basis for essential international research. It was not always so unnecessarily complicated!

Redefinitions of M.E. - a 20th Century Phenomenon by Dr Elizabeth Dowsett

M.E. is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis. It has an UNIQUE Neuro-hormonal profile.

Dr Elizabeth Dowsett

In the 1980s in the US (where there is no NHS and most of the costs of health care are borne by insurance companies), the incidence of ME escalated rapidly, so a political decision was taken to rename M.E. as "chronic fatigue syndrome", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians and medical scientists, but all objections were ignoredů To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to government Ministers and to Members of Parliament, resulting in the withdrawal and erosion of both social and financial support [for M.E. patients]. Influenced by these psychiatrists, government bodies around the world have continued to propagate the same falsehoods with the result that patients are left without any hope of understanding or of health service provision or delivery. As a consequence, government funding into the biomedical aspects of the disorder is non-existent.

Professor Malcolm Hooper

References

All of the information concerning Myalgic Encephalomyelitis on the HFME websites and books is fully referenced and has been compiled using the highest quality resources available, produced by the world's leading M.E. experts. More experienced and more knowledgeable M.E. experts than these - Dr Byron Hyde and Dr. Elizabeth Dowsett in particular - do not exist.

Between Dr Byron Hyde and Dr. Elizabeth Dowsett, and their mentors the late Dr John Richardson and Dr Melvin Ramsay (respectively), these four doctors have been involved with M.E. research and M.E. patients for well over 100 years collectively, from the 1950s to the present day. Between them they have examined more than 15 000 individual (sporadic and epidemic) M.E. patients, as well as each authoring numerous studies and articles on M.E. Again, more experienced, more knowledgeable and more credible M.E. experts than these simply do not exist. For more information see the References page.

The misdiagnosis letter for CFS misdiagnosed (non-M.E.) patients

This form is designed to be filled out by the CFS misdiagnosed patient and then shown or sent to friends, family members or carers

Hello ___________________________________,

Some time ago I let you know that I was ill. I also told you in the past that the reason I was ill was that I had Chronic Fatigue Syndrome or CFS (or perhaps CFIDS or ME/CFS or CFS/ME).

I would now like to let you know that this was in fact a misdiagnosis.

It turns out that the field of 'CFS' is not at all what it first seems. On this topic our medical system, media and even government have been less than forthcoming with the facts. The amount of misinformation circulating is just immense. The public, doctors and even most patients themselves have been deceived about the reality of 'CFS.'

To make a long story short, what happened was there was a huge increase in the rates of a devastating neurological disease called Myalgic Encephalomyelitis (M.E.) in the 1980s in the USA. In response to this, some medical insurance companies (and others) decided that they would prefer not to lose many millions of dollars on so many new claims and so they created a new vague fictional disease category called 'Chronic Fatigue Syndrome' to try to confuse the issue of M.E., and to hide M.E. in plain sight.

They then made the definition of 'CFS' so broad and vague that people with hundreds of conditions ranging from mild to very severe to life threatening could be diagnosed with it, which saved them even more money as many of these insurance claims could now also be easily denied.

To summarise:

A. Myalgic Encephalomyelitis is a distinct neurological disease. M.E. is characterised by (scientifically measurable) damage to the brain caused by a virus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

B. Chronic Fatigue Syndrome in contrast is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as 'CFS' is 'medically unexplained.' Yet once patients are given a 'CFS' misdiagnosis, further testing is usually denied! A diagnosis of 'CFS' does not mean that a person has any distinct disease (including M.E.).

Every diagnosis of 'CFS' can only ever be a misdiagnosis. However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled, with any number of well over 100 different conditions including post-viral fatigue syndromes, cancer, MS, Lyme disease, Fibromyalgia, Candida, depression and many many others. All a diagnosis of 'CFS' actually means is that the patient has a gradual onset fatigue syndrome which is usually due to a missed major disease. The patient population diagnosed with 'CFS' is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a 'CFS' (mis)diagnosis.

The 'CFS' concept has meant that millions of people have been denied correct diagnosis and treatment and have also often been subjected to terrible abuse and a lack of appropriate support.

So now for all the patients out there like me, it's a nightmare.

The only way forward, for the benefit of society and all the different patient groups involved, is that:

1. The bogus disease category of 'CFS' must be abandoned completely (along with all the other similarly vague, misleading and unhelpful umbrella terms such as 'ME/CFS,' 'CFS/ME, ' 'ME-CFS,' 'CFIDS,' 'Myalgic Encephalopathy' and others).

2. The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy.

3. All those misdiagnosed with 'CFS' must immediately reject this harmful misdiagnosis and begin the search to find their correct diagnosis. Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery and this process must begin with a correct diagnosis if at all possible. A correct diagnosis is half the battle won.

The concept of 'CFS' denies patients their basic rights and subverts good science and ethics. I refuse to play any role in propping up this bent system and concept and so I reject this misdiagnosis.

My correct diagnosis is:

­ _______________________________________________________

­ An as yet unspecified neurological disease

­ An as yet unspecified muscular disease

­ An as yet unspecified infectious disease

­ An as yet unspecified post-viral syndrome

­ An as yet unspecified pain syndrome

­ An as yet unspecified vaccination-related illness

­ An as yet unspecified complex disease involving many different bodily systems

­ An as yet unspecified ______________________________________________

Whether I have been fortunate enough to have been given a correct diagnosis as yet or not, I would ask you to treat me now no differently than if I did have a correct diagnosis. Many well-known diseases have an average diagnosis time of several years or more. This lack of a correct diagnosis due to lazy or poor quality doctoring, the complexity or rarity of my disease or whatever other factors is not my fault. Please don't punish me in any way for it, as I'm probably already suffering with this lack of a diagnosis enough unfortunately. A disease starts causing pain and suffering the day it begins, not just the day it is correctly diagnosed!

Please also understand that this is absolutely not about me just wanting a fancier or scarier sounding name for my illness. It is about the 'CFS' concept needing to be abandoned, so that patients will no longer have their basic human rights violated. It is about 'CFS' not being my correct diagnosis.

The bottom line, however, is that in essence nothing has changed in what I am telling you. I'm still saying to you that I'm significantly or severely ill, and this was not and is not my fault or something I can wish, positive think or exercise away. My illness and disability is unchanged and is a reality, unfortunately. Things are difficult for me due to the symptoms I have and I could really use your support and friendship.

I wish I had known all of this earlier, but there is so much poor quality information out there and overwhelming and very slick and manipulative support for the bogus 'CFS' or 'ME/CFS' constructs. It took me a while to work out where the truth lay. But at least I know now, and now you know too.

This is a very important issue to me so thank you so much for reading this.